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Author
Topic: fifteen years...and counting.. (Read 7936 times)

Hello. It has been fifteen years...did I day fifteen?...let's see...diagnosed 1993. Good grief. In spite of myself, It appears that I am going to be a Senior Citizen...with HIV...huh. Eight years ago, I stopped taking my meds due to a series of events, and now a different series of events have brought me back to the Aids Outreach Center and I am scheduled to start Truvada/Viramune after acceptance into the drug assistance program, probably 3-4 weeks. Have been lurking, reading your posts on dealing with life and meds and then I joined and now I'm posting. Maybe I will even reply and be able to contribute something worthwhile, after I get settled in and a little more educated.

« Last Edit: April 08, 2008, 01:56:41 AM by rondrond »

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Congratulations on 15 years... and, welcome. There was a time when I didn't think I'd make it to stress tests and colonoscopies... but they're right around the corner. Whether its reaching middle age, approaching senior status, or enjoying golden years, it seems quite a few of us are marking milestones that seemed unimaginable not so very long ago.

I was diagnosed + in 1989. It's really amazing we've survived so much, isn't it. Things I never used to worry about (cholesterol, heart, lungs etc) are now more immenent. Hell, the first years after diagnosis, I was just worried about not dying from teh AIDS or the awful meds we used to have to take.

Glad you've found us, and I hope to hear more from you. Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Thanks Betty.I never expected to live this long. Now, I'm like bugging Mom for 'Family History'. She says "you know who your family is" and I reply, yeah, but what did they DIE from? Suddenly, it's an issue. Everytime I have an appointment, I have to fill out a three-four page questionnaire (which I have noticed..hey, these are the same questions...let me post the answers on my website and you can read them online.) They have computers and it would save me a lot of time. Sometimes, I wonder if I checked the same boxes on each one But, I am getting used to the fact that I am an old man. I even joined AARP Unfortunately, I have never found anything I could use in their services, so will not renew. Though, I did enjoy their Games section..

ronnie

« Last Edit: April 08, 2008, 08:27:22 AM by rondrond »

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Congratulations on 15 years... and, welcome. There was a time when I didn't think I'd make it to stress tests and colonoscopies... but they're right around the corner. Whether its reaching middle age, approaching senior status, or enjoying golden years, it seems quite a few of us are marking milestones that seemed unimaginable not so very long ago.

Best,

Rich

Ya know, I never thought of myself as old until I filed for SSDI back in September. In their literature, I noticed their defintions of 'age' and 50-55 was considered to be advanced age. Not just aged, or old, but ADVANCED. I had to call Mom and chide her for not telling me that I was now an old man. I had a DVT/Bilateral PE and the hopital recommended I file for SSDI to get an initial filing date. I looked up the application online and after attempting to read the first paragraph, I called Binder & Binder Advocates saying..."HELP"...I have been denied twice, but those first two attempts did not have my HIV status, as I have only just gone to AOC March 26th. I'm not sure what a stress test is. Is that when during my Disability exam, he had me 'perform' work actiivities and when he was through with me my blood pressure was 194/94? O.O

« Last Edit: April 08, 2008, 08:46:17 AM by rondrond »

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

I think a stress test is like when you walk on a treadmill and they monitor your heartrate. Of course, I could be wrong and if I am, hopefully someone will correct me.

About AARP, hey, they're my Medicare Part D providers, and I'm only 42!

Good luck with the whole SSDI thing. I've been on that since 1994, when I had a bad round of wasting and went down to 80 lbs and was expected to expire. They denied me once, but it went through the 2nd time straight away. I've heard it's a struggle to get today. Maybe you should try and get it for mental reasons also, you know add that to the physical ones. I hope it doesn't take you ages to get it. But, hey, if it does, maybe you'll get tons of backpay. Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Medicare Part D...hmmm. See, I'm already learning something new. But, I think that I won't be eligible for Medicare/Medicaid for two years after SSDI is approved. I've been doing some research, but not on 'PARTS' as I don't see those in my immediate future. I haven't worked since July 4th, when I was hospitalized with DVT, and have been living on my Savings. I knew that it would be hard to get and am budgeting my money better than Scrooge. I'm supposed to go in front of a judge this third appeal and I have heard that they are usually more likely to approve you than these disability examiners, who I've heard have to meet 'quotas' and can only have so many approvals , but that sounds weird to me.

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Rond, I'm not sure how long it takes for all the Medicare parts anymore. When I got on SSDI, I was immediately on Part A, had to wait a year for Part B, and then when Part D (prescription plan) came out, of course, everyone was on immediately. I don't understand why you'd have to wait for 2 years for Medicaid though. That's a state run program, not really federal.

Good luck with the judge, please let us know how it goes. Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Welcome to the forums.In the 80"s when I applied for ssi I had it easy , looking back its kinda funny now . I applied by phone and was excepted immediately . when I called to make an appointment to apply I had a bad cold . I sounded like hell and was hacking and coughing . when the guy on the phone found out HIV was the reason for the call and I was eager for a face to face meeting he declined and offered to handle my application through my doctors office fax machine . He called me back the next day and told me it was all taken care of , I did not need to be interviewed . I also got a fat check for the past year of not being employed .

Welcome to the forums.In the 80"s when I applied for ssi I had it easy , looking back its kinda funny now . I applied by phone and was excepted immediately . when I called to make an appointment to apply I had a bad cold . I sounded like hell and was hacking and coughing . when the guy on the phone found out HIV was the reason for the call and I was eager for a face to face meeting he declined and offered to handle my application through my doctors office fax machine . He called me back the next day and told me it was all taken care of , I did not need to be interviewed . I also got a fat check for the past year of not being employed .

Sometimes. I am in the right place at the right time, and sometimes not. I keep feeling that they are watching my assetts and I am not going to get anything until I have paupered myself. Weird, paranoid, thinking, but I haven't had such an accounting of my 'life' since I was self-employed and was audited by the IRS.

ronnie

« Last Edit: April 08, 2008, 10:59:38 PM by rondrond »

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Rond, I'm not sure how long it takes for all the Medicare parts anymore. When I got on SSDI, I was immediately on Part A, had to wait a year for Part B, and then when Part D (prescription plan) came out, of course, everyone was on immediately. I don't understand why you'd have to wait for 2 years for Medicaid though. That's a state run program, not really federal.

Good luck with the judge, please let us know how it goes. Luv,Betty

I am still learning all these terms and trying to put pieces in place. Everything is so jumbled in my brain. It took me 3 months of family and doctor intervention before I stopped trying to get up and go to work. The hospital literally had me tied to the bed for a week until I acknowledged that I had 'died' and come back and it could happen again, if I did not follow 'doctors orders'...unfortunately, or fortunately, I do not always believe EVERYTHING they say...they can make mistakes...and I have to research and think on it and and my next appointmentm there I am with my computer printouts and they're looking at me like..oh lord, what have you found now?

ronnie

« Last Edit: April 08, 2008, 11:09:58 PM by rondrond »

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

LOL...yes...I will see the edges of their lips turn up as though they want to laugh at me, they will take the offering, glance at it, set it down on a counter, and then try to preoccupy me with the ever-popular listening of the heart. Unfortunately for them, they will ask "are you exhibiting any problems?", which follows that I will retrieve the discarded paper and start reading it for them...LOL

« Last Edit: April 09, 2008, 01:26:20 AM by rondrond »

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Sounds like your attitude is pretty normal. I waited 2 yrs. for SSDI, but then they paid me retro for the 2 yrs. But I must say that I finally called the person assessing my medical history, which is over the top in many ways with plenty of evidence of disability, and I started bawling at them...yelling and whining...saying things like "What ARE YOU PEOPLE doing down there? Are you trying to actually help anyone??? If a person with HIV for 20 yrs and now Avascular Necrosis in both shoulders and hips isn't good enough, then who the Hell are you helping??"...etc...etc. I was approved the next day. How about that. Well, the story here is that you are surely not alone in this struggle. Keep at it, be as persistent as you can.

Also, make sure they are deducting medical expenses, and certain living expenses when evaluating your MedicAID. This put me in the right category. When Part D came along, however, it took me back out.

Hey rond... regarding those notes from the internet , I have found if I read / memorize info that I want to convey to my docs. , then slip it into the conversation into the form of a question I get much better results . The trick is to make them think its they're idea . This seems to go down a bit better when dealing with a doctors ego .,,, By the way , Your bio reads very similar to mine ( that is if I wasn't to lazy to actually include one in my profile ) I was a barkeep for over 15 years .

Hey rond... regarding those notes from the internet , I have found if I read / memorize info that I want to convey to my docs. , then slip it into the conversation into the form of a question I get much better results . The trick is to make them think its they're idea . This seems to go down a bit better when dealing with a doctors ego .,,, By the way , Your bio reads very similar to mine ( that is if I wasn't to lazy to actually include one in my profile ) I was a barkeep for over 15 years .

I have tears in my eyes...of joy...I have been reading some of your posts in other threads. I started laughing and had to walk away from the computer to recover.

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

They say that you appreciate things more when you have to work for them. I used to chase the mail person down if when checking the mail box, there was no mail....hey..how dare you...certainly I'm worth at least a piece of junk mail? Now, I relish having an empty mailbox as when I get something, it is usually bad news or something that is going to make me have to work. Today I got two letters from Binder & Binder. They are moving my files to the office in Dallas, which means that my court hearing to determine my Disability is getting close. Upon calling my 'new' case worker I discover that I am living in a dream world again. Apparently, when given a one to two year wait for determination, I wasn't paying attention. Yes that was said, but the 'wait' doesn't start when I filed, or when I got my first denial, or even my second denial. It will start, after I receive a 20 day notice that I actually have a hearing scheduled. So after already waiting for 7 months, and while I thought that I was nearly out of the woods and wading through the Poppy field, I find that I still have another year or two. I immediately made a mental calculation of my remaining assetts and I still might make it, but it will be close. I have a unique opportunity up my sleeve for any emergency. My disabled sister, who lives with me and is my dependent, has approval to have an 'aide' come in for 15 hours a week and do her laundry, empty her potty bucket and help with her bathing and cleanliness. 10 years ago, I had approached them, since I was already doing these things after work, could I be paid. No, back then, they stated that a family member could not be paid for doing things that they considered I would do anyway. Now, that has changed, but in filing for SSDI, I am not supposed to be able to do ANY kind of work. I am in a Catch 22 here. So. I am 'waiting', but the good news is, I have a backup plan, of sorts, if my money starts to run low and there is no other solution presenting itself. (I just refuse to pauper myself over this. I have worked too hard for too many years just to not have anything left because they state that there are not enough judges) Maybe I need to re prioritize...I have been wrong before...

« Last Edit: April 10, 2008, 05:35:40 AM by rondrond »

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Rond, I'm not understanding things clearly (that's nothing new for me, trust, I can be slow on the uptake). You have another year or two before your eligibility is determined? I don't understand why that is.

Well, on the good side, once approved, you should get a ton of back-pay.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

They are telling me that I will be going before a judge who will determine if I get SSDI or not. Apparently, there are a shortage of judges and they are backlogged and that when they determine a date/opening for my case, I will get a letter 20 days before that date to 'get my house in order'...This court date before a judge could take one to two years as they are backlogged from this shortage of judges. I too, am just floored, You aren't slow, because I don't understand it either, this is why I hired Binder & Binder to take care of this for me as I couldn't even fill out the application. At least, not right away. I do have a college degree and could probably figure it out, eventually.I didn't make it to 55 and have what I have by being completely ignorant. I just thought Binde/Binderr would be a fast, quick, easy way out and now....How is someone supposed to survive that long?

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

ok, It's been a week since I joined. I have done a lot of reading and learning, and now, I have been 'approved' and have permission to start HIV meds and the pharmacy has been called and they have been ordered and will be here on thursday...two days from now...this is what I wanted, so why are my arms numb and I am short of breath and my neck is feeling like it doesn't want to hold my head up so I can't move, becasue if I move I don't know what will happen to my stomach as it is balled up and aches and I am afraid that I am going to throw up... and I feel that I want to cry...but this is what I wanted and I feel that I might just need to slow down and put on the brakes but this is what I wanted...I have never had a panic attack..is this a panic attack? why would I have a panic attack...this is what i wanted...I am sitting here and my whole body feels like it is being sucked upwards, I feel sick to my stomach...this is what i wanted...this is what i need..

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

LOL, no gravity hasn't claimed my chest. ..let me relook...yep, everythings still where I remember it being....I have walked the house, retrieved the trash bin form the curb, checked the mail box and wolfed down a handful of pringles cheddar cheese chips and have been eyeballing the can of mixed nuts...stop it..dinner is around the corner....and in front of me is what probably set me off, a hospital bill for $20.000.00 from my DVT. ...nasty thing...we'll just put that on the bottom of this pile over here and come back to it...later..now,thanks, humor is always appreciated, although now I find myself craving a nice set of nips...thanks a lot.. I think I was just having a 'moment'....

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

thanks, yes, I feel better. no apology is needed, I enjoy a sense of humor, sometimes it is all that gets me through some of the things that come around to knock me down. I was going to pm you when I saw that you had edited so you wouldn't freak out. Everything is coming together and I should have known that when Snow White is singing in the forest with the birds and dancing with Prince Charming that the wicked witch is coming around the corner. I now have to figure out how to convince them to write off this bill without turning it into a 'collection' thing...

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

I once ran up a huge bill a North Western Hospital in Chicago . I contacted a social worker at the hospital and she arranged for it to be written off . The worst that they can do to you is put you on a payment plan for what ever you can afford even if its a few dollars a month . Ironically a social worker once told me to never offer or except a payment plan if I truly cant pay the bill .

guess i'll be calling them and throwing myself at their mercy. before taking them on though,i have bloodwork on wednesday, i still have my first dental appointment on thursday and picking up my HIV meds and then actually swallowing them. Then i will take on the rest of the world. it really pisses me off that I have been waiting for everything to happen... and waiting... and then it all happens... at once. I have to get up earlier tomorrow so I can call and confirm the dental appt before noon, as I will doing labs at that time...then I will rpobably be sitting arouind waiting again.

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"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Medical bills can be written off, if you can't pay them. I wouldn't worry too much about that. It does sound like everything else is coming together. Sometimes, when we're trying to get things done, we get caught up in the continuous energy of doing them. Then, when they happen, we can tend to crash. At least that's what happens with me.

Good luck to you. Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow